Seeking Support: Resources For Stroke Survivors And Their Caregivers

A stroke can have a significant impact on the lives of those who experience it and their loved ones. While recovery can be challenging, there are many sources of help available. Support from caregivers, family, and community resources such as support groups, adult day care, and home health services can aid in the recovery process. Additionally, national stroke organizations offer online and offline assistance, including forums, reference materials, and community support. These organizations provide valuable information on stroke treatment and rehabilitation, as well as tips for daily living and regaining independence. The financial burden of a stroke can also be substantial, and resources are available to help navigate insurance coverage and manage the cost of prescription drugs. Online communities and helplines also provide emotional support and practical advice for stroke survivors and their caregivers.

Support groups for survivors and caregivers

The American Stroke Association (ASA) offers comprehensive support for stroke survivors and their caregivers. They provide an extensive range of resources, including an online community, educational materials, and support groups. The ASA's Stroke Family Warmline connects survivors and their families with an ASA team member who can offer a listening ear, provide support, and share helpful information. They also offer a monthly email newsletter with news, resources, and stories tailored to stroke survivors, family members, and caregivers. Additionally, the ASA has a Stroke Support Group finder to locate local support groups.

The Stroke Support Association (SSA) is another organization that empowers stroke survivors, their families, and caregivers through group meetings and education. They provide free, separate support groups for stroke survivors and caregivers, currently held via Zoom due to the COVID-19 pandemic. The SSA also offers an extensive range of resources, including an information packet, a cookbook for stroke survivors and their families, and tips for caregivers.

Other national organizations, such as the American Stroke Foundation, The Stroke Network, and the Family Caregiver Alliance, also offer online and offline assistance. These organizations provide online forums, reference materials, community support, and free resources for stroke survivors and their caregivers.

It is important to note that community support, including support groups, can significantly aid stroke survivors in their recovery, resocialization, and integration back into their local communities. These groups can be a valuable source of ongoing encouragement, practical advice, and emotional support for both survivors and caregivers.

Online resources

The American Stroke Association provides a wealth of online resources for stroke victims and their caregivers. They offer an online community of survivors and caregivers to provide support and share experiences. The association also has a monthly email newsletter that delivers news, resources, and stories from fellow survivors and caregivers. Additionally, they provide educational materials covering prevention, treatment, rehabilitation, and life post-stroke.

The Stroke Support Association offers online resources, information, and community support for stroke survivors and their families. Due to the COVID-19 pandemic, they have temporarily converted their in-person meetings to a Zoom format.

The Family Caregiver Alliance is another valuable resource, offering free assistance, education, and support to primary caregivers and those under their care. They also have a National Center on Caregiving that provides information and assistance with public and private programs for caregivers.

The Internet Stroke Center is an independent web resource that provides comprehensive information and facts about stroke care and the latest research.

National organizations such as the National Stroke Association and the American Stroke Foundation also offer online forums and reference materials to aid in recovery and regaining independence. These organizations often produce recovery guides, fact sheets, and other publications to assist stroke survivors and their caregivers.

For those seeking online support groups and forums, the American Heart Association and AbleData are additional resources to consider. AbleData, in particular, provides information about assistive technology products and rehabilitation equipment.

Respite care, adult day care, and home health services

Respite Care

Respite care provides short-term relief for primary caregivers, giving them time to rest, travel, or spend time with other family and friends. This can last anywhere from a few hours to several weeks at a time and can take place at home, in a healthcare facility, or at an adult day care center. Respite care can be provided by family, friends, volunteers, or professionals.

Respite care services include:

• Supervision and companionship
• Assistance with activities of daily living (ADLs) such as dressing, bathing, and eating
• Basic medical care, such as wound care or medication assistance
• Household tasks, such as laundry, grocery shopping, and light cleaning
• Transportation to appointments or errands
• Meal preparation and assistance with eating

Adult Day Care

Adult day care services are provided in various settings, including church meeting halls, senior centers, and assisted living facilities. Seniors typically spend six to eight hours at adult day care, participating in activities, socialising, and receiving personal care services and assistance with ADLs. These services are ideal for caregivers who work outside the home and need daytime coverage or those who need a break to handle personal errands.

Home Health Services

Home health services can be provided by professional in-home caregivers or home health care aides. In-home caregivers can assist with basic caregiving duties such as toileting, grooming, and mobility, while home health care aides have advanced training and certification to provide higher-level medical care, including medication administration. These services can be provided on an as-needed basis or on a scheduled basis, such as two days per week.

Financial and insurance guidance

The financial impact of a stroke can be overwhelming and unpredictable. The lifetime cost of ischemic stroke has been estimated at $140,048, including inpatient care, rehabilitation, and follow-up care. Here is some guidance on financial and insurance matters for stroke victims:

Financial Guidance:

• The American Stroke Association's Finances After Stroke Guide provides information on Social Security Administration Benefits, the Patient Advocate Foundation, managing the cost of prescription drugs, and getting the most out of therapy coverage. This guide can help stroke victims and their families navigate the complex healthcare environment and maximize their recovery.
• The Stroke Foundation provides grants for stroke survivors experiencing financial hardship to help cover the costs of physical, occupational, or speech therapy. Applicants must be over 21, reside in the USA, demonstrate financial need, show that their health insurance benefits related to therapy have run out, and prove their need for continuing therapy.
• Help Hope Live is a nonprofit organization that helps stroke patients and their families with community-based fundraising to assist with unmet medical expenses and related costs. They provide personalized fundraising materials, guidance on rallying the community, sharing stories on social media, and planning fundraising events.

Insurance Guidance:

• The American Stroke Association's Insurance Coverage Guide offers a comprehensive overview of insurance processes and barriers, such as prior authorizations and insurance appeals. It covers different types of insurance, including private and government insurance, and includes a glossary of terms. This guide is especially useful when seeking help from insurance companies to cover medication or medical service costs.
• It is important to understand that medical insurance typically does not provide 100% coverage for stroke patients. While Medicare can be a significant source of support, there will likely be expenses that are not fully covered.

Choosing the right rehabilitation facility

After a stroke, rehabilitation is key to achieving and celebrating all the small victories on the road to recovery. It can help stroke survivors regain their strength, courage, and independence.

What to Consider

When choosing a rehabilitation facility, it is important to consider the following:

• The facility's approach to rehabilitation: Does the facility take a multidisciplinary approach to rehabilitation, involving a team of medical professionals such as rehabilitation specialists, nurses, physical, occupational, speech and language therapists, and mental health professionals?
• Personal needs and goals: Every stroke is unique, and so is every stroke survivor's journey to recovery. Consider the specific needs and goals of the individual, and choose a facility that can provide personalized care and support to help them achieve their goals.
• Location and accessibility: Consider the location of the facility and how accessible it is for the stroke survivor and their loved ones. Is it close to home, or will accommodation be required? Are there any transportation options available if needed?
• Community and support: Recovery is enhanced by community support and social interaction. Look for a facility that offers support groups, online communities, or other resources that encourage connection and social engagement. This can help reduce feelings of isolation and provide emotional support during the recovery process.
• Quality of care: Ensure the facility has a good reputation and is known for providing high-quality care. This includes considering the facility's success rates, patient satisfaction, and the expertise of their staff.
• Financial considerations: The financial impact of a stroke can be significant. It is important to understand the costs associated with rehabilitation and to explore options for financial assistance or insurance coverage.

Available Resources

Several organizations offer resources and support for stroke survivors and their caregivers, including:

• Stroke Support Association: Offers resources, support groups, and education to empower stroke survivors and their caregivers.
• American Stroke Association: Sponsors support groups and programs across the U.S. and provides information and resources to guide stroke survivors and their families.
• American Stroke Foundation: Works to improve the overall quality of life for stroke survivors, caregivers, and families.
• The Stroke Network: Provides online support, information, and resources for those affected by stroke.
• The Internet Stroke Center: An independent web resource offering information and facts about stroke care and research.

Frequently asked questions